Medical care has its own code and culture, which often does not put patients first, according to Dr. Marty Makary, a cancer surgeon and researcher at Johns Hopkins School of Medicine and the School of Public Health. And providers who speak against that code can pay a heavy price.

Makary’s new book, “Unaccountable: What Hospitals Won't Tell You and How Transparency Can Revolutionize Health Care,” explores why patient harm persists in the medical system and what can be done about it.

Dr. Makary: The debates about health care reform frustrated me because our complex system of health care and culture of medicine were reduced to simple sound bites. People pushed the idea that changing the payment system would solve the problems. But I observed every day what I see to be the main driver of health care costs: the massive variation in the quality of care – across the country, within cities, and even within good hospitals.

I saw this variation in quality and the alarmingly high error rates, and it hit me that unless we can be open and honest that up to 30 percent of health care is unnecessary, and that 1 in 4 hospital patients are harmed by a mistake, then we’re just going to be continuing to beat our heads against a wall trying to pay for a broken health care system, instead of fixing it.

PP: What type of problems did you observe?

Dr. Makary: I saw cases where a patient was not told about a minimally invasive way of doing a particular surgery because of physician preference or training, and the doctor would just hope that he wouldn’t find out. If that patient were empowered by talking to the right people, or by doing his own research, he would be able to get superior care. It’s no wonder that about a third of all second opinions about surgery yield different opinions.

Medical mistakes are the fifth- or sixth-most common cause of death in the United States, depending on the measure. But few people look at it that way. That’s because we haven’t been honest about it in the past. And we have hospitals that fire doctors and nurses when they speak up.There was a nurse recently fired in Florida for complaining about a doctor doing unnecessary procedures, a report substantiated by an internal report gotten by The New York Times. A cardiologist in Wisconsin was fired for pointing out that EKGs were misread more than 25 percent of the time. We need to change the culture of medicine.

There is New England Journal of Medicine-level data that suggests that almost half of care is not compliant with the evidence. In my own field of cancer surgery, I have seen patients treated in ways that are not supported with evidence.In the case of radiation treatment for pancreatic cancer, there is evidence from large cooperatives overseas that there is a harm to radiation. Many studies show no evidence of benefit to radiation, and yet patients are routinely offered radiation treatment and have the expectation that it’s going to help them do better. I see PET scans offered routinely – an expensive test – that has never been shown to benefit diagnosing pancreatic cancer.

PP: Why do these problems persist?

Dr. Makary: There’s been a corporatization of health care where we have a system where we tell the hospitals to fill the beds, so the hospital administrators fill the beds. We tell the doctors to do more procedures, so they do more procedures. For patients, we create a nation that more care is better care, and so they demand more care. Everyone is doing their job. The problem is we have good people working in a bad system.

The desire and reflex of docs to offer something to patients, even when there’s not much more else they can offer. There’s a strong financial incentive. Doctor groups pay for new equipment that they purchase on borrowed money.

We are also evaluated by the number of “value units” at the end of each fiscal quarter. Our management will sit down with us and say your work units are down or up and in order for you to receive a large bonus you need to increase the number of operations you do. There is increasing pressure on doctors to see more patients, prescribe more medications and do more procedures. This is something that the public is shocked about when they learned about it.

Medicine was not always this way. When I was growing up we had a great community hospital that had lots of community trust. It was almost a charitable institution. The head of the hospital was the head doctor. Now health care looks different. If you have an issue and want to deal with it, it’s like trying to appeal a cell phone bill. Patient rights are limited, and the doctors themselves get frustrated by the growing divide between management and frontline providers.

We have a system where the frontline providers – doctors, nurses, secretaries, technicians, support staff – are part of a corporate culture. They don’t feel that they own the medical culture. They feel like tenants where the management is their landlord. That translates, in our research, to more mistakes, more overtreatment and more waste. If we’re going to get serious about reducing health care costs and improving patient safety, we need to get serious about replacing workplace culture in modern medicine. At about half of hospitals we’ve surveyed, most of the employees said they would not go to that same hospital for their own care.

PP: Can you point us to any bright spots?

Dr. Makary: In the book I try to balance every shocking story with a positive new trend in health care or an exciting success story. In medicine now we have some organizations that post complication rates online and discuss them. And younger doctors are changing the culture. The new generation comes from a different mindset. They have little tolerance for secrecy and demand transparency.

One doctor I found provides a video of each colonoscopy to the patient, to ensure quality control and to serve as a permanent record. He did research to show recording procedures improves quality by 30 to 40 percent. There’s a campaign at Harvard and a few other hospitals called Open Notes, which makes the notes in health records immediately available for the patient to see and even edit. The Society of Thoracic Surgeons partnered with Consumer Reportsmagazine so patients can look up important metrics of hospital performance.

At Johns Hopkins we have gone through a metamorphosis. We’ve made mistakes in some care that have been tragedies. Based on these experiences, the hospital developed a strong research and practical interest in advancing patient safety. I feel fortunate to have Peter Pronovost as a research partner and an institution like Johns Hopkins, where the leadership has praised my book.

PP: What type of transparency should patients demand from doctors and hospitals?

Dr. Makary: Patients should be able to know all of their treatment options, including active surveillance or watchful waiting as legitimate options, as opposed to treatment, surgery or medication. All of these options should be disclosed to patients to get at the problem of overtreatment and undertreatment.

Patients should know about a mistake as soon as it happens. When I make a medical mistake and quickly disclose it to patients, they appreciate it. I can look back almost every year and think of a CT ordered on the wrong patient, or a lab test misinterpreted, or a delay in diagnosis because of a communication failure with my team. Patients are hungry for real honesty in their medical care.

Patients should have easy access to their medical records, which is not true at many hospitals. Sometimes patients are expected to pay $200 or $300 for their records.

Hospitals should report complication rates in a way that’s risk-adjusted, meaningful and user-friendly to patients. They should report how many of each particular condition they see in a year and readmission rates, infection rates and other simple metrics of performance. Patients don’t have to walk in blind.

PP: What are the biggest barriers to increasing transparency?

Dr. Makary: Complacency and blind trust are the greatest barriers. The complacency is embodied in the traditions of medicine. Medicine has its own culture, values, vocabulary and justice system. Part of that culture is that we only listen to ourselves.There’s a tremendous amount of appropriate respect for tradition and hierarchy, like in the military. But now that the knowledge has expanded, so there are so many services offered by a hospital that you have to ask why care isn’t more coordinated. We’ve had little science behind how to implement good care safety and coordinate care safely. That’s the greatest challenge now in the system, asking the questions of how we can cut the giant costs of health care, which is funding unnecessary overtreatment, medical mistakes.

And the blind trust is the blind trust of the public. It’s not their fault. They have no choice but to walk into an emergency room and get treated by the first doctor on call. But the treatment is too often based on that individual’s practice rather than what’s the best evidence.

The exciting thing is that as organizations provide meaningful information to consumers, patients can do meaningful research and reward places that do well and not seek care at places that don’t perform well and have a closed door culture. The general public’s frustration with the hassles and lack of coordination in health care now have people hungry for common-sense and large-scale reforms. We’re seeing that now with orgs stepping up and addressing quality. Health care costs are not going to reigned by different ways of financing our system, but by making it more transparent so that patients can fix the system. I’m convinced that the government is not going to fix health care. And doctors are not going to fix health care. It’s going to be the patients.

17 comments

THANKS to Dr. Makary for having the courage and integrity to risk bucking the “code of silence” culture (to discuss what is usually swept under the rug), and BRAVO to Marshall Allen and ProPublica for publishing this article.

This really brought back unsettling memories. I had a major menopausal bleeding issue and my hemoglobin was getting low leading to shortness of breath and dizziness. OB/GYN suggested D&C, colposcopy under general anestheic then a TAH although there was only evidence of fibroids. Long story short, next Doc did an in - office biospsy, started iron, used progesterin IUD-if that did not work, the next step was going to be ablation but the IUD cured me after months of a shocking amount of bleeding and fainting and I happily still own my reproductive sysytem. The original OB/GYN was a good doctor but he just would not try anything different when I humbly asked for a “less invasive” treatment. What the hell! We do not even know all the long term effects of loss of uterus, etc. Seems like all my middle age friends lined right up for hysterectomies (DaVinci is big), never wondering aabout alternatives.So..thanks for bringing up some of these issues.

Dr. Markus is right on target and offers a crucial component to the solution but transparency IMO is only half the solutions. The problem with transparency is who enforces it? Right now we have a honor system. In the current system the administrators would be torn between profit motives and transparency. Typically transparency only works if you also have appropriate financial incentives (e.g., you make more money by delivering better patient outcomes) and not just by lowering costs which creates the problems of medical errors in the first place.

The biggest barrier isn’t complacency it’s the fear of the costs of quality of care and of physicians being fired for incompetence IMO.

Very meaningful article. I pray your words travel far. I was injured four years ago during a blood draw, contracted VRSD, and became mobility disabled within weeks. Despite being a center for study of this condition, concern for liability was so strong even to this day I can not get access to a doctor in my city as all fear the hospital. So do lawyers. Its been a nightmare, this is a neurological condition. I begged and pleaded for them to do MRI of my foot and leg and arm where the disability was but they kept saying I was ‘demanding’ medically unnecessary testing, I was denied a wheelchair. I begged for help with the pain. 3 years later, loss of our home, homelessness and now, my son and I separated, the MRI revealed a cyst on my nerve in my right ankle and tear at the top of the foot, exactly where I told them it hurt. I still have never had an MRI on the right arm the nerve was damaged, they blocked all treatment and testing. When we finally got the MRI, the doctor (outside the hospital but knowledgeable of my case) didn’t even tell me the MRI results knowing the testing had been delayed and I fought so hard to get it. I called to ask why he had not reported the results, they will not even speak to me and continue to bill me! I am an advocate for just the approach you describe. I am now trying to survive having had my career shifted forever. I am strong, but this is the biggest challenge of my life, and hardest experience to face the lack of help from the doctors, and being hurt there. I want to be part of positive change forward. Thank you for what you are doing. I really pray it won’t be this way ever again. I documented my experience in Letters of Courage. Just hearing that this medical culture might change is healing.

In a recent hospitalization, I took a rather aggressive approach to getting quality care because it became quickly obvious that I was not getting the whole story. I ended up using my own smart phone to investigate my symptoms, to research all the medicine they were prescribing. I eventually had to override my own doctor when could tell she was about to make some poor choices. It was an eye-opening experience. I eventually told the doctor she was akin to a ‘contractor whom I would not allow to work on my home without supervision’. Needless to say, we did not part as friends, but I did recover and finally got quality care.
My wife is a nurse and she does not suffer fools gladly, be they other nurses, doctors or hospital administrators. Her absolute commitment to excellence, though, has been a shield most of her career, though she’s ruffled her share of feathers.
He advice, for all patients, is to research, ask questions and make sure you get answers. Always get second opinions. Never settle.

How about wheat grass?How about pot.Both these plaints help humans cope.It is proven that cannabis oil kills cancer cells.Since we know now this is true,than if enough of this oil is ingested it will cure cancer and people won’t have to have their organs surgically removed.Now,if pot was legal everyone that wanted to could treat their own illness’s without the use of a doctor.Another thing.If everybody was told the truth about pot it would be replacing chemo and radiation all together.When the people of the world find out that they have been lied to,what do you think might happen.Every single stae in the US that has medical marijuana is finding out how much they have been lied to.We are always going to need doctors this is for sure.Just remember,organs don’t have to be taken out of your body just because you have cancer.

Although I agree with the principles discussed in the article, I see many of the same recommendations that are leading to more problems, not fewer. The push to see more patients does not come from payment on the front line; it comes from 30 patients in the waiting room, some possibly dying. And instead of discussing a revamping of the primary care system and true single payer reform, we discuss transparency and disclosure as though that will somehow fix the problem. That’s good in theory, but until tort reform occurs it will only be a tool for litigation and acrimony. Primary care doctors, plentiful and available, can help patients make informed decisions before they need to be made in the heat of the moment, and help patients get what they really want. Otherwise, I’m ‘doing everything’ on a 90-yo with advanced cancer who doesn’t understand her own disease and a family that hasn’t approached the discussion of her code status. Make my note as transparent as you want and force me to disclose all the possible risks of central line placement as well as my own complication rate (which I do), and discuss all the possible risks of all the possible tests as well as the risks of skipping those tests at the bedside if you want, and while I do so for 30-40 minutes, the rest of my ED is full, mortality is increasing overall due to ED crowding, and my PG scores are falling because patients with a cold don’t understand why they have to wait for their useless antibiotics that increase their risk of complications (which they will argue strenuously for because they are ‘empowered’ and know better than I do, even if I say I wouldn’t give antibiotics to my own family). Overall, this column points out true problems with the current system, but from the ivory tower of academia it seems so easy to say ‘disclosure and transparency will solve all’ while the reality on the ground is much more dire and complex.

Anonymous makes two fantastic points and a bad one. The bad one is as most readers here probably already know, tort reform, as it is discussed by insurance companies and Republicans, is not the answer as that doesn’t solve the other issues that anonymous brings up which is time urgency among medical staff and that although transparency can be useful it can be used as a PR ruse, a way to avoid comprehensive solutions.

The big problem not addressed by transparency is that there is nothing in the system to push physicians to work more and more and more. The Supreme court doesn’t allow insurance companies to be sued no matter how much they pressure physicians. The insurance industry also tells physicians that tort reform will cut costs and allow them more time. Obviously, that’s not the case as the profit motive would just kick in again as it did in Texas when they passed tort reform laws and there was no reduction in malpractice insurance.

The great argument that anonymous makes is that transparency is also liked by insurance companies because it again falsely puts the blame on the front-line personnel and not on the system which is where the real problem lies. Medical personnel go to school to help people. The problem is the system forces them to think about things other than providing the best care they possibly can (e.g., fear of lawsuits, think about time, money and even to resent their patients).

Even the public option isn’t a complete answer. You have high medical error rates and other problems in countries with the public option. What you need is to change the incentives so the only concern that front line people have is that they provide quality care and that they have adequate time for quality review and training if necessary. Medicine is evolving at an incredible rate but how does a for profit system provide time for retraining or sufficient time for quality review. Where is the incentive to do what needs to be done in a for-profit system?

Most medical mistakes can be avoided if the system allows reviews of medical abilities and training for deficiencies but instead the attitude which is encouraged by for-profit systems is reward quantity and not quality.

So what would real tort reform look like? It wouldn’t be tort reform at all. It would be a community efforts to insure that future errors don’t occur including looking at all the problems that contributed to the medical error including legal fears, misinformation in the medical records, poor or non-existent protocols, over-working front line personnel and for-profit motives. It would also look not just for blame but for how to prevent the problem from occurring in the future including looking at retraining, fewer patients, better protocols, less greed from administrators and insurances companies. That system would change the incentives for the legal system and there high quality non-profit systems around the world that know how to reduce medical errors so that medical personnel incentives just have to focus on quality of care.

Another problem is you have lots of organizations and conferences that discuss patient safety but they don’t invite patients. For example, the government conference Partnership for Patients which is just winding up now http://www.healthcare.gov/compare/partnership-for-patients/join/index.html even though surveys show that 1 in 3 patients believe they’ve been the victim of a medical mistake.

Great article and some thoughtful comments. One that stood out to me was @anonymous’s:

“Primary care doctors, plentiful and available, can help patients make informed decisions before they need to be made in the heat of the moment, and help patients get what they really want.”

Plentiful and available doesn’t seem to represent reality in many parts of the country, does not appear to be backed up by numerous other articles/studies/stats I’ve read and will most certainly not be true as 40+ million ‘insured’ are added via PPACA.

And I’m sure there are many great PCP’s, FP’s, IM’s and Peds out there who “help patients make informed decisions” and “help patients get what they really want.” - I’m just wondering if they are the majority?

Insurance raises demand (by hiding the actual costs of medical care) for a finite number of doctors. Tort reform sees overworked doctors and points at patients with entitlement issues who actually want the correct lung removed.

But we all know that, after an eight hour work day, most of us are barely capable of driving ourselves home, yet doctors routinely get stuck with back-to-back shifts under conditions that are substantially more stressful. Then they screw up, and we try to find out what makes the doctor bad.

The problem that (the right kind of) transparency is going to solve is showing us where the problems lie: Doctors working long hours miss things they should know better. That means the simplest solution is to get more doctors.

But the only way the AMA will allow that is if they see the damage they do first-hand, hence we need the data collection.

Bruce, the next twenty-five years are going to be even stranger than even you think. The identification of “cancer stem cells” suggests that either cancer actually evolved to be a healing mechanism that we need to fix or (more immediately and less optimistically) that we can “collapse” a tumor by encouraging the stem cells to become something benign.

The US makes it to easy for doctors to come here from all over the world.So what if doctors from Africa only pay twentyfive grand for an education.People from the US that want to be doctors should go there for their learning.You are not really going to learn anything anyway until you’ve been working for about ten years.The state i live in doesn’t have medical marijuana,but i know personally ten doctors that are going to sign to get it on the ballot for 2013.How many other doctors are afraid to rock the boat,because of what someone might say.You can not tell me that hospials and doctors really want to use the treatments they have been using for the last fifty years.THE DON’T WORK and the side affects will kill you anyway.This hospital says,we have this new treatment.lets use the current treatment first and if it don’t work we can try the new treatment.The first treament has started killing every organ in your body before you get to the second treatment or the new one.

Increased transparency is a good thing.
However, it will only go so far to help the most vulnerable of populations: the elderly and demented, the illiterate, the desperately poor and uneducated and unsophisticated, the non-English speakers, the mentally ill.
Delivering quality care—or as I think it would be better phrased—Pride and love of your work and patients, has to be a core value of all medical professionals, not just a slogan trotted out by administration as code for “It is the doctor’s primary responsibility to make sure everything goes perfectly, at all times, even if it is a crappy system.”

More than 1 million patients suffer harm each year while being treated in the U.S. health care system. Even more receive substandard care or costly overtreatment.

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